Tuesday, August 01, 2017

So about that unicorn…

“Engagement” has been the name of the game, almost
literally, for us over the last three weeks (plus one day).When we got here this is not what I expected –
I thought we would find out more about Becca’s particular brand of SPD, get
tipped off into the ways it is manifesting that maybe we weren’t tuned into,
and learn about how to help her navigate through the world with all of that in
mind.

Uh, not so much.What
we really found out was that before we could help her juggle the building
blocks of sensory development we needed to help Becca engage with us.What does that mean, exactly?Well, there are entire books about this.Entire conferences on what it is, why it’s
important, how to help establish it.And
in all honesty, I’m still grappling with the whole idea, as it’s not something
I’ve had to think about with my other kids.

Basically, we are trying to enter into Becca’s world, where
she is, and connect with her.This
sounds nebulous, I know.And when I look
at this through my professional goggles it sounds nearly identical to what we
try to do with children who have autism.Dr. Stanley Greenspan, who I quoted a few days ago, has written a book
that our OT, Mim, recommended to us.“Don’t
get hung up on the title,” she said.“It’s
called Engaging Autism, but really it
should just be called Engaging Children.”

I won’t lie: it was hard for me to accept the idea that I
wasn’t engaging with my child, or that I needed experts to help me do it with
Becca.But child development is a crazy
magnificent thing, and when things proceed typically this isn’t usually
something you have to be super intentional about (at least in the deliberate
way we are going about it).But children
with developmental delays, or those who have problems with sensory regulation,
don’t develop typically; things don’t unfold in the predicted sequence, taking
longer in some areas, maybe skipping over others.Development is uneven; when you have to
master all of steps 1-6 before you can master step 7, but somehow you missed
step 2, you run into roadblocks.

Engagement is Becca’s step 2.It means that she can connect with us as with
the task at hand, be it crawling around in the ball pit, playing a “night night”
game or chasing lights around a darkened room.She can play with us, not just
beside us.Engagement is about the
relationship she has with us – and I think this is why it’s hard for me to wrap
my mind around why we need to be intentional about it, because Rob and I
definitely have loving, affectionate relationships with Bex.But that is a different thing than getting
her to engage with us while she is immersed in another activity – one that
might be hard work, or soothing, or simply just really enjoyable to her.Asking our girl who struggles to get her
sensory motor running to invite us into her play, without revving her engine so
much that the car stalls, is a difficult task.

Engagement is a powerful tool.It harnesses the strength of our relationships
– trust, love, comfort, confidence – and allows those things to undergird
things that are harder for her – sensory regulation, language, motor
skills.By intentionally engaging with
her, right where she is, we give her opportunities to practice these things,
build on them, and expand her abilities.One minute of engagement becomes five, then seven or ten or maybe
30.As our opportunities to engage
increase, so do our opportunities to help her expand her language and communication
or to simply give her experiences where she can practice these things on her
own.We have seen her become less
overwhelmed by her environment and more curious about it – less flight from one
activity to another, more interest in what
does this do? and how can I make that
happen?

I don’t want to paint the picture that Rob and I have this
whole engagement thing mastered.Like I
said, it takes a lot of mental work (how, exactly, do I engage with a girl who
is lying in the back of a dark closet?) and physical work (up and down from the
floor to the ball pit to the closet to the Rainbow room to the floor again and
now to the tower!).Dr. Greenspan’s
approach for working on engagement is called “Floortime” for a reason; getting
yourself down, physically, to your child’s eye level is a key element to this
type of work.And although we are
playing, it is absolutely a lot of work, for all of us.

Floortime is a method of intervention that is based upon Greenspan’s
model for understanding child development, called D.I.R – Developmental,
Individual differences, and Relationship-based.It is summarized nicely here:

“The objectives of
the DIR® Model are to build healthy foundations for social, emotional,
and intellectual capacities rather than focusing on skills and isolated
behaviors.

·The D(Developmental) part of the Model
describes the building blocks of this foundation. Understanding where the child
is developmentally is critical to planning a treatment program. The Six Developmental Capacities/Levels
describes the developmental milestones that every child must master for healthy
emotional and intellectual growth. This includes helping children to develop
capacities to attend and remain calm and regulated, engage and relate to
others, initiate and respond to all types of communication beginning with
emotional and social affect based gestures, engage in shared social
problem-solving and intentional behavior involving a continuous flow of
interactions in a row, use ideas to communicate needs and think and play
creatively, and build bridges between ideas in logical ways which lead to
higher level capacities to think in multicausal, grey area and reflective
ways. These developmental capacities are essential for spontaneous
and empathic relationships as well as the mastery of academic skills.

·The I(Individual differences) part of the Model
describes the unique biologically-based ways each child takes in, regulates,
responds to, and comprehends sensations such as sound, touch, and the planning
and sequencing of actions and ideas. Some children, for example, are very
hyper responsive to touch and sound, while others are under-reactive, and still
others seek out these sensations. The term "Biological Challenges"
describes the various processing issues that make up a child's individual
differences and that may be interfering with his ability to grow and learn

·The R(Relationship-based) part of the Model
describes the learning relationships with caregivers, educators, therapists,
peers, and others who tailor their affect based interactions to the child’s
individual differences and developmental capacities to enable progress in
mastering the essential foundations.”

For Becca, this means understanding where she is
developmentally, across all domains; understanding how she regulates sensory
input; and how our relationships with her will help her to progress.

It’s a lot.Yes, I
know.And really this is a final exam, I
hope the teacher is feeling generous sort of overview of everything.But I think it’s enough (I hope it’s enough)
to help paint a picture of where we are starting with Becca.Because, oh yes, this is just a start.Engagement is our ticket in; it’s the way we
lay a foundation to do more of the hard work in language, and communication,
and play, and sensory regulation, and early academic skills and on and on and
on.

It is daunting.

But here is all we have been asked to do and remember: Just
play with Becca.If she is lying in the
closet, get down on the floor and play “night night” with her.Over, and over, and over and over.Be as amazed by how fun this is as she
is.Be amazed through the boredom of
playing in a closet, over and over. Watch for a little sparkle – and then go
there.Do it again and again.Expand the game; maybe Foof goes night night,
or Papa, or maybe Becca needs to wake everyone up.Do it again.Again and again.Don’t overburden
her with lots of language or physical demands – but recognize when she is
seeking out those physical demands and don’t overburden her with expectations
of lots of engagement.Dot it
again.Again.Watch for more sparkle – and then stay there
longer.Wait for more exchanges or
patterns.Start to give language to her
game.Stretch things, just a little, to
expand the play.Support her.Follow her lead.Do it again.Figure out how to do it when her play is looking for the stuffed kitty
cat, or walking down a ramp, or squishing a ball on her head.Follow her lead.Be amazed at how fun this is.Watch for the sparkle – go there.Again and again.Wait for her.Slow down.Keep her in her “just
right” zone.Do it again, and again, and
again.

Play with her.

And now you’ve glimpsed the unicorn.I will say – it truly is magical when you see it, and it leaves me a little melancholy
when it disappears again.But I know it’s
out there, and I’m not going to stop looking for it.

Soon Rob and I will stalk the unicorn on our own.I think we can do it.I know I’ve got a great team back at STAR
that will point me in the right direction when we find ourselves in the weeds,
and I know we’ve got a great team at home who will help us track the unicorn,
too.Because really, the unicorn is
right here.It’s Becca.She is as fabulously magical and pure as the
legendary creature and I know that once we draw her out we will find a strong
and fierce girl, capable of overcoming whatever stands in her way.

Unicorns, yo.Don’t
mess with them.Wild and beautiful and
capable of anything.